NEBATAs aim is simple, to fight for the right to a full life for those affected by Thalassaemia. This rare genetic blood disorder can cause disabling anaemia, requiring monthly blood transfusions and the knock on effects of these transfusions, on the bodies organs.
NEBATA is a safe space for patients and their families, for place of friendship, education and support. In the 30 years, since establishment, we have been part of the lives of thousands of new patients, old patients, new parents, old parents and the wider vibrant and important Thalassaemia community. We have run over 30 educational meetings, 10 residential trips for children (not forgetting the siblings!) and support for involvement in international meetings and networking, as well as creating accessible reading material. the funds raised will contribute to our first face to face meeting for patients and their families, since the lock-down. Re-igniting our projects to support young adult patients, particularly in the difficult times following the most severe lock-down periods. And finally give the younger patients and their families a well deserved break to unwind and reconnect with the wider community of patients, carers and families.
NEBATA is a small group with a big heart and needs all the support they can get so that no one is left behind in the potentially dark and difficult times that can come with, this rare but terrible disorder, Thalassaemia.